When my son was diagnosed with EE more than a decade ago, there were scarce resources on the topic. When I found APFED, I had a place to connect with other parents and learn more about the disease. Since this is a rare condition, the ability to find online resources is key, and APFED fills that need marvelously. Since then, with my son's condition under control, I have been able to support the organization and give back in other ways. I can't think of a better organization to support!

When was your last experience with this nonprofit?

I have been volunteering for APFED for years. The professionalism and organization of the staff and other volunteers has always impressed me. But what is most impressive is their passion and dedication to this wonderful cause!

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

When our daughter was diagnosed with an eosinophilic disorder three years ago, we felt we had no where to turn for information. We had never heard of the disorder and knew no one else with it. At a ro... more

i became aware of APFED after my daughter was diagnosed with an EGID. I am so grateful for all that APFED does for patients and their families. The annual patient conferences, educational pamphlets, website, legislation and research involvement is extremely valuable. If it were not for APFED I know I would not be the advocate for my daughter the way she needs and deserves to be advocated for. This is due in large part due to the information that I have received from APFED. I am able to communicate to my daughters physicians, teachers, and others in my community about eosinophilic disorders based off of the education I receive and continue to receive from APFED.

Ways to make it better...

If I had to make changes to this organization, I would...

Offer community outreach grants

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

When our daughter was diagnosed with an eosinophilic disorder three years ago, we felt we had no where to turn for information. We had never heard of the disorder and knew no one else with it. At a routine doctor appointment the physician mentioned that an annual patient conference given by Apfed would be held in our state in the following few months. We attended the conference and learned more in those few days about the disorder than we had in the 6 months since our daughters diagnosis. Apfed provides education, support and promotes awareness of a disorder that can deeply affect a patients life.
I am grateful for Apfed and the help they offer patients and their families.

The Great!

I've personally experienced the results of this organization in...

finding the support and education needed to help my daughter get the medical care and emotional help she requires to deal with this disorder.

Ways to make it better...

If I had to make changes to this organization, I would...

1. Make a file on the website that would allow individuals access to legislative material to help with state or national amino acid insurance coverage.
2. I feel many members are not aware of or know how to become involved in organizations such as NORDA or Senate bills that may affect amino acid coverage.
3. Find a way to let more doctors, doctor offices and hospitals aware of Apfed and its local chapters. Register for United Way in each county and state where there is a support group.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

Did your volunteer experience have an effect on you? (teaching you a new skill, or introducing new friends, etc.)

By starting a local support group I have met other families and patients that live with this disorder every day. I love and cherish each of them and the lessons they teach me and my family. I would not have even thought of starting a support group if it were not for Apfed.
Became active in state legislation.

APFED is an amazing organization that advocates for patients and families. When our son was an infant he was very sick. He was borderline malnourished and we couldn't figure out the cause of him being... more

I am a mom of a child with EoE. APFED has blessed our family with the wealth of information it provides to families that travel this path. The resources that it offers families is priceless. It provides detailed information to help guide families with coping skills, to preparing your child for school, to celebrations and even recipes for restrictive diets. APFED holds annual conferences to educate, create awareness and to make a difference in the lives of so many people. APFED changed our life through one of its conferences. We were a family struggling with a new diagnosis and found much needed support to help guide our family. It's been 10 years since our first conference as a family and APFED continues to amaze us!

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

APFED is an amazing organization that advocates for patients and families. When our son was an infant he was very sick. He was borderline malnourished and we couldn't figure out the cause of him being so sick. After numerous tests, scans and steroids our son had no change in his condition. At the age of 2 he was misdianosed with acid reflux. Our son was diagnosed correctly with EE at the age of 3 and then was removed from all foods at age 4. This was a drastic change in his life and ours. How do you tell a 4 year old that there is no more food in his world? Our family was gieven this information and then given the name of APFED as an organization that may be of help to us. The first day back from Cincinnati Children's Hospital I called the number to APFED and spoke to the president. She was encouraging and helpful and put me in contact with other families who were struggling down this same path. Through numerous conversations and encouraging words our family was guided down the path of adapting to a foodless world. When I expressed a willingness to coordinate a grand rounds, I was provided with everything that I needed to follow through with that objective by APFED. We were impressed by the dedication of APFED to families, to education, to initiatives and to research that we decided to hold a fundraiser for APFED. We had never taken on such a task before but we were driven on behalf of our son and on behalf of an organization that was instrumental in saving our family unity. We decided to hold a golf tournament and donate all of the proceeds to APFED. Wow! What an inspiring thing we did together as a family. Working together on this project helped to mend our broken and hurting hearts knowing that we were contributing and giving back to an organization that helped us more than words can say. We are now in our 6th year of holding a fundraiser and have raised over $80,000 for APFED. We are paying it forward and will continue to do so. APFED has made huge strides on behalf of patients and families and the least we could do is give back. APFED will always have a special place in our hearts for giving us the HOPE to keep on. Thank you APFED!!

The Great!

I've personally experienced the results of this organization in...

I have personally experienced the results of this organization's commitment to patients and families.

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What I've enjoyed the most about my experience with this nonprofit is...

that APFED puts patients and families first. This has been shown by their persistance to establishing universal codes that are recognized by the medical community in diagnosing patients.

The kinds of staff and volunteers that I met were...

extremely helpful and generous with their time. Whatever questions I had were quickly answered and when help was needed with certain situations, encouragement was offered.

If this organization had 10 million bucks, it could...

make a huge step in wiping out a disease that painfully affects so many.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

I am a mother of three children with EoE and also manage this disease as well. APFED is an incredible resource patients and doctors alike. I have attended two conferences and gathered valuable information concerning eosinophilic disease. APFED provided excellent and timely information to my husband and I as we were pushing for elemental formula coverage legislation in our state this past year, and it was critical in our efforts and communications with state legislators.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

APFED is an information-rich resource for families who are wrestling with an EGID. They work tirelessly to provide cutting-edge information, as well as to organize the disease community around educational and fund-raising opportunities. Their conferences are a tremendous opportunity to exchange ideas and meet new people who are living with the disorders. APFED's leaders also do a tremendous amount of advocacy to help ensure that patients get the medical care that they need. We are so grateful to have found APFED and to have opportunities to volunteer for this excellent nonprofit.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

APFED has been a blessing to our family, as we deal with EoE with our three children. The conferences are a great resource to meet with other families and doctors and understand the disease and treatments from a variety of sources. Lately, APFED was critical in providing and sharing information related to Legislative activities in other states to allow us to successfully pass similar legislations in Nebraska. Without this critical resource, we wouldn't have been able to advance critical assistance to assist in the care of children. APFED is very responsive with information requests through e-mail and other social media venues, maximizing communications.

I am a volunteer who raises money for apfed. but MOST important I am a mother of a child with EGID. these apfed support groups help everyday by giving muh needed support and guidance through this rare condition

When Emily was first diagnosed at 10 months old, doctors recommended taking her off all food and beginning drinking elemental formula exclusively. We didn’t really know how to cope and daily functioning was difficult for not only us as parents, but understanding how to support our daughter. When we were connected with APFED we finally were able to understand and be educated on what was happening and allowed us to take each step with knowledge about what was happening.

A month after learning about APFED, a staff member connected us to a local support group and finally we felt hope again. I felt like I could breath again and cope with our new adjusted life. APFED has an amazing group of professionals and volunteers that are dedicated and personally want to support and better the community through education.

Ways to make it better...

If I had to make changes to this organization, I would...

I would make the website more user friendly to help families feel like they can get involved with fundraising. One example might be, I would make it where individuals can have a team page that tracks their fundraising efforts. This makes it easier for the volunteers know how to get started and donors like to see progress and that their donations are a part of a greater good.

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?